Way back when

Last week was the anniversary of my original biopsy. While I don’t remember much of the actual procedure, I do remember having to wait a week before I got a call back from the doctor. February 11, 2005 was the day that confirmed I had ‘it’. Though the bone and CT scan that would take place the next week confirmed the extent of the spread, the biopsy was the real start of the horror.

I know I over use this expression, but so much has happened, so much has changed. One thing that hasn't changed since then was a statement I wrote back on February 11, 2005, 
‘I don't want to die, this is harder than I even expected, pray for me’.

We settled into a routine years ago, one that provides enough comfort for us to function on a daily basis. It accounts for the peaks and valleys between doctors’ appointments and the other typical things that go on in a family. Last week was slightly better when it comes to the side effects, but I still struggle. There’s plenty of fight left in me all these years later. The bottom line however is I’m still not ready to die. I feel like I have a lot to do. So the feelings of nausea and fatigue just add to the weight  that I bear on a daily basis, and at times have me wondering how much more can I do?

An update on 'the Buddy System'

As a follow up to the article that was published last June, the editors of 435 South Magazine asked John and I to film a little chat session that they plan to use on their website.

This was filmed sometime last September. It was completely unrehearsed and our one and only take. Let me know you think!

7 year itch, of a different type

Today is the 7th anniversary of my blog. Seven years, almost 700 entries later, and I’m still here.
 

The last line of my first ever post holds more true today than ever:
But I worry about them both emotionally and psychologically. I can't imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have..... 

 

Physically, the seven years and eight different types of treatment for this disease have taken their toll. Not being able to play disc golf or even work out gets to me. The lack of both make me feel lethargic at times. I want to do more, but can’t in some cases and shouldn’t in others.

A friend said today, ‘I don’t know how you get through one or two of the side effects, and you’re dealing with all four’. I told Mary the other night that I am so sick of it (the side effects). Just like always though. I trudge along and just keep praying that the reduced dosage, or one of the new meds, or a combination of the two will end at least one of the side effects. That alone would be a huge burden lifted from my shoulders.

You know the saying “If I could go back and do “x” over again, I wouldn’t change a thing…..” in this case I’m calling BS early and often. I’d change most of the last ten years if I knew it wouldn’t lead me here, now. At times it just sucks, this is one of those times.
~~~~~~~~~~
Though it started this way, this post isn’t going to be 100% about me being sorry for myself. There are so many other good things in life that I celebrate on a daily basis. I have a wife and son that I love dearly. I have family and friends that remain close and are so very important to me. I live in a world so full of hope and possibilities I have to stop and appreciate that fact from time to time.

Novena to Saint Peregrine
Oh great Saint Peregrine, you who have been called "The Mighty" and "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you.

Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.

An interesting thing happened on the way.......

Monday was my monthly oncologist appointment here in Kansas City. It went rather well, in fact I'd almost say it went great!

Dr. V provided new prescriptions to try to help with managing the side effects. The first is an appetite enhancer. I wish it had been prescribed for me initially when I started experiencing the nausea. The first dose seemed to help with dinner last night, I took the second dose before lunch today so should have an indication soon if it is consistently effective. Last night it really helped with nausea. I am hopeful that it will be the same today. The doctor is understandably concerned about my fatigue and weight loss due to the on-going nausea and intestinal issues. With not many treatment options, Mary and I are doing our best to stay positive and make informed decisions.  The doctor is very compassionate and open to helping us choose the right path.

The other three scripts were for potassium (mine is low!), another type of medicine to try as an option to combat the nausea, and a refill on another drug I take to help me to sleep.

I also received an update on my PSA, the last three measures were:
Dec 5:  1,961
Jan 3:    1,317
Jan 30:  1,799

Those are rather wild swings and we are trying not to focus on the PSA, although it is rather difficult to ignore a number that high. We continue to try to focus on the good news from Boston last week after the bone and CT scans, with increased shrinkage in the tumors in my bones and the CT scan showing that the organs are still clear. We have very much to be thankful for!

The Cake Gets Bigger

Today is my 49th birthday. Frankly, I wasn't sure I was going to make it, seriously.

The first birthday post I publishedin this blog was in 2006:
http://prostatecancerat42.blogspot.com/2006/01/were-going-to-need-bigger-cake.html

Although a number of names would need to be added to the acknowledgment portion, I likely could have re-posted the entry word for word this year and the message would have been then same.

It's a weekend of friends, family, relaxation and celebrating 49. It also marks the beginning of all the sorted milestones, initial diagnosis, first scans, official diagnosis and the beginning of living with this dreaded disease. I'll do my best to mark each of these with a post.

For now, HBD2ME!!

A beautiful day in Boston

Yesterday, I flew up here to Boston in order to have updated CT and bone scans. Both procedures were uneventful, except once again, the CT fluid acted like a barium enema. I'll leave it at that. Needless to say, my afternoon in the hotel room pretty much sucked.
Last night it was pouring down rain, so I just went to an Italian restaurant connected to the hotel and picked up dinner to go. Between not being in my own bed and the residual effects of 150mg of Prednisone, I slept like a baby, with colic! The good news is my appointment was not until 1:00 PM, so  I was able to sleep a little later this morning to make up for my lost sleep.

I ran into my friend Ralph from New Jersey. It was nice to see a familiar face and catch up with him.  He is in the same trial, and currently on the same dose (75mg). He is also
experiencing the same side effects as me,: lack of appetite, nausea, diarrhea, etc.
We'll touch base later this week to compare the outcomes of both our appointments.

I went over everything in detail with Dr. S and he recommended we change to a lower dose (50mg). I told him I'd like to see the bone scan first. When we compared yesterday's scans to those taken in August, it was incredible to see the contrast and a relief to be able to see how much the tumors have gone down. Even comparing the scans to those just taken 9 weeks ago, there were very noticeable reductions. Some of the reporting from the pharmaceutical company lags behind but what they did have showed a 42% overall reduction from Aug thru the November scans. After yesterday's it might be 50%. After seeing these, we agreed to lower the dose to 50mg. The doctor was very certain all the side effects would lesson by doing so.

I return to Boston again in 6 weeks just for an appointment to meet with the doctor, and then 6 weeks later I will return for the same routine as this week to have updated scans.

There was snow on the ground when I arrived yesterday. Right now it's 55 degrees and
sunny! Somebody sang 'Life is good today', and I agree - it sure is.

Winter's got a hold on me

As I mentioned in my last post, I had this big plan to blog a lot this year. I’ll eventually catch fire and start to post more, but for now, winter’s got a hold on me and I just don’t feel very creative or motivated. I can't complain about the weather that we have had so far this season, but it is still winter.

There are no real changes in my health. The fatigue is a little better. I have been in the office full time for seven straight days. The lack of appetite and diarrhea continue. The former is constant, the latter day to day.

I will share that I am reading the Steve Jobs biography. While I was always a fan and thought highly of him, this book has totally changed my opinion. To me, his management style and the way he treated people completely take away from his creative brilliance. I’m just half way through with the book, but cannot image there is some hidden gem in the latter half of the book that will change my perception of the man. Once again, his work and the products Apple created upon his return in the late 1990’s are unheralded,  but at what cost to his family, friends and those that worked for him. This is just my opinion, you can decide on your own. The book is a thousand pages, and for the most part, a page turner.

Since we didn’t go to St. Louis over the holidays, we have been pleased to have family visit here in KC. Last weekend  my brother Doug and his wife Michelle came in.   We didn’t do much except watch some movies and football, but it was good to have the house full and spend time with them. The weekend coming up my other brother Dan, sister Barb and nephew Zach are coming. I look forward to that as well.

For now I will continue to trudge through winter. It has been extremely mild here in Kansas City and it looks like it might continue for the next several weeks. The next thing you know it will be spring, my favorite season of the year.

1961

First of all, although things are slightly better, my intention to start the year off with a bang and my goal to post multiple blogs has fizzled. I'll try to get better the year goes on, I promise.

I'd like to start with two prayer requests. There are multiple men I could list but tonight my mind is on Terrance from Seattle and a former neighbor of ours Jennifer. Terence had his 4th chemo infusion this week as well as a blood transfusion. He's having a rough time, so please find a minute for T.  Jennifer is battling stage IV colo-rectal cancer. She is planning to head to MD Anderson in a few weeks and I hope and pray that she will find a clinical trial that proves to be an effective treatment for her cancer. Again, please include them both in your prayers.

This week I had my monthly Oncologist appointment here in Kansas City. A few of my blood markers are borderline low, potassium was one. Initially, we are going to try to increase the level with diet.Mary already came back from the store with lots of bananas, avocado and coconut water. As bad as my appetite has been, I was happy that more things weren't out of whack!

Before I break the big news I have to remind you all of a few things: first the clinical trial medicine that I am taking addresses bone tumors. Though they measure my PSA in Boston, the doctor and I don't discuss it. It is the bone scan that is the key marker.

We knew my PSA would rise because as part of the trial I had to stop taking androgen blockers. It was a risk we were willing take at the time. This week we asked my local Oncologist for my PSA and though Tuesday's measurement was not ready, my December 5th reading was 1,961. That is up from 1,043 in November and around 400+/- when we started the trial on August 30th.

On one hand, it's just a number, the scans are what's important (I tell myself in a semi-convincing manner). On the other hand I think, "Holy Roger Maris! 1,961"! From there the questions begin to mount, questions that I will be discussing with Dr. S when I return to Boston later in the month. Short term, I'm not to worried, what this might mean and how it will impact my treatment long term is what I am concerned with mostly.

Looking ahead

I was going to add an end of year post about all the things that happened in 2011, then I decided it is all documented within the blog already. I also decided against it because frankly 2011 kind of sucked. Sorry, I have no polite way to say how I feel about the last twelve months.

This post however is about looking ahead to 2012. The last two weeks have brought further improvement to the fatigue and nausea I have been fighting. Things are not 100% but they sure are better. I just need my appetite to return to normal so hopefully I can put on some of the weight I lost. I was able to walk with the disc golf crew both Wednesday and this morning and that felt wonderful both physically and mentally.

I want to keep this short so in closing I wish each of you a happy and blessed 2012!

Merry Christmas!

As Brad and I prepare for our Christmas celebration, we would like to share with you our appreciation and dedication to David.  Our seven year journey since David was diagnosed with advanced prostate cancer has taken us on an emotional roller coaster ride, but more importantly, it has allowed us to grow closer to each other and we have learned to appreciate each day.

Starting the FLHW foundation was solely due to David's vision and his desire to make a difference in the prostate cancer community.  As we learned that there were limited treatments for a man with advanced prostate cancer, we all agreed that we wanted to try to support the research for new and/or improved treatments, and ultimately a cure. As we began this new journey of our life, we were inspired by the Prostate Cancer Foundation (PCF).  Not only did we partner with them to support the medical research and promote the importance of early detection, but we also turned to PCF to help us to understand what our treatment options were. PCF also provided resources for us to learn what we could do to manage David's disease. Ultimately, what PCF did for us was to give us hope.  One of the darkest days a cancer patient can have is a day when he/she must struggle to find hope.

Enclosed below is a link to PCF's annual report.  David's story is featured amongst several other PC survivors.

http://www.pcf.org/site/c.leJRIROrEpH/b.7908621/k.A115/Our_Stories.htm

Brad and I are very proud of David's positive approach to battle this disease and his selfless determination to help others along the way. Of the many blessings we are thankful for this Christmas, we are most thankful for being together as a family.

We would like to wish each of you a very Merry Christmas and a hopeful, happy, healthy New Year.

God Bless,
Mary & Brad